1.5 year old daughter has thal minor, concerned about 9.0 g/dL HGB

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I'm not sure what to do here, maybe the best bet is to visit a nutritionist?

Anyway, we had a hemoglobinopathy test done to confirm our suspicions of thal minor beta, and it was confirmed.  We had previously been told multiple times about a large iron deficiency, which I suspect was due to low HGB, but am not quite sure how they were testing (it was at the local WIC office).  Here are the results:

RBC 5.30 M/mm3 (expected 3.70-5.30)
HGB 9.0 g/dL (10.5-13.5)
HCT 29.3% (33-39)
MCV 55.3 fL (70-86)
MCH 17.0 pg (23-31)
MCHC 30.7 g/dL (30-36.5)
RDW 17.6% (11.5-14.2)

Now my question is, how can we tell if she has an iron deficiency on top of the thal minor?  Do we need to get a different test?

I also wonder about my other daughter's and my own numbers too (especially vitamin D living in rainy Oregon).  Should me and my daughters start getting regularly tested, or start visiting a nutritionist?  Is the typical nutritionist going to give us bad recommendations because they know nothing about thal minor?  Should I/we visit a hematologist?

I've read the Nutritional Advice thread and it seems like great advice, but at the same time I kind of would want to know where I'm starting before adding any supplements too.


Offline Andy Battaglia

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Re: 1.5 year old daughter has thal minor, concerned about 9.0 g/dL HGB
« Reply #1 on: April 21, 2015, 11:35:17 PM »
A full iron panel should be done to test for iron deficiency (IDA). This will include serum ferritin, serum iron and TIBC (total iron binding capacity). Using Hb or serum ferritin alone is a mistake made by over 90% of doctors when diagnosing IDA. There is nothing in the report here that would diagnose IDA. However, the RBC is at the very high end of normal, which is typical for thal minor, but when IDA is also present this will usually be lower. A full iron panel should be done before diagnosing minor, and don't be surprised if the ferritin is low, as many minors who don't have IDA have low ferritin levels. With thal minor, the TIBC may be the more critical value.

I would be surprised if IDA is present because the RBC is high, as it is in thal minor due to the overactive bone marrow. I do think attention to nutrition is most important, but iron is not one of those necessary nutrients that can help thal minors. The first thing I like to tell minors is get the D level tested, as most discover they do have low levels, and deficiency can exacerbate most of the issues found in thal minor. The level should be a minimum of 35, with a goal of over 50. Low dose supplements have almost no value. Most people find that doses of at least 5000 IU daily are required to raise the D level. If your daughter does test deficient, at her age, I would suggest at least 2000 IU daily. D is available as a liquid that is very easy to take. I use a supplement from Now vitamins that contains 1000 IU per drop. This can make it very easy to give to kids. She should also definitely be on daily folic acid, as the overactive bone marrow depletes many nutrients, as it produces ineffective red blood cells. It is important to replace these nutrients. These include folic acid (L-methylfolate is the preferred form), B complex and magnesium. Thalassemics are also subject to much oxidation and focusing on a diet that includes plenty of antioxidant foods and supplements like natural vitamin E can be of great use. I would suggest reviewing the post at http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774

Most nutritionists will have very little understanding of the needs of thalassemics. Even with testing, you probably will not see that higher amounts of certain nutrients are being used by the body, but once you understand that the excessive bone marrow activity leads to depletion of essential nutrients, you will see why nutrient replacement is essential for thals. Most doctors won't recognize that minor has symptoms, which is quite puzzling considering how many minors suffer from anemia that is not helped by iron. And this is why this group includes thousands of thal minors. They've for the most part, given up on help from doctors and find much more help from a forum where thal minor and its effects are actually recognized and understood. Nutrition and exercise are the two most important things that minors can employ to better their quality of life. Your daughter's Hb is lower than it should be for a minor. I think adding certain supplements, especially folic acid, can help that. You might also consider wheatgrass extract, as it does affect fetal hemoglobin level in many thals, and your daughter does show enough HbF where there is a good chance it can be affected.

All we are saying is give thals a chance.


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